After the diagnosis: first steps

The feedback conversation and the report

According to the guideline, the diagnostic assessment is to be communicated by the specialised service. ^{[1, Rec. 36]} The British source guidelines it referred to named: discussing results carefully and without delay, providing a written report that explains the findings and reasons, passing the report on, with consent, to the GP and other people involved (nursery, school, care), offering a follow-up appointment within six weeks and, if autism was identified, discussing the risk for siblings and offspring. ^{[1, Ch. B.6.3.1]} Whether this is how it works at your service is open: the guideline stated that in Germany there was no reliable knowledge and no consensus on this and that very different approaches had to be assumed. ^{[1, Ch. B.6.3.2]} You may ask about anything that is still unclear and request the report.

A contact person and advice

The 2021 guideline recommended that care measures should be coordinated by a single point (“case management”), especially in childhood and adolescence, where several support systems are often involved. People with autism and their families should be informed in detail and in an understandable way about treatment options, support options, legal requirements and entitlements. ^{[2, Rec. 6]} Where this coordination is missing, you can use independent advice: Finding advice: EUTB and other services. All parents should be offered psychoeducation (information about autism and possible co-occurring conditions) after the diagnosis. ^{[2, Rec. 106]}

Planning support

• Clarify goals: According to the guideline, therapies and support should have concrete, time-limited goals. ^{[2, Rec. 1]} Overview: What support helps?.
• For small children: Early intervention for autism and My child has been diagnosed with autism – what happens next?.
• At school age: reasonable adjustments and support plans: Reasonable adjustments at school.
• The person’s wishes: People with autism should be asked regularly what wishes and expectations they have of their care. ^{[2, Rec. 4]}

Rights and benefits

Which benefits come into question for you depends on the individual case. An overview of the most important routes:

• Responsibilities: Understanding the support system
• Severe disability card: Severe disability card and degree of disability for autism
• Care level: Care level for autism
• Integration assistance: Integration assistance: benefits and responsibility
• Applications and objections: Applying and filing an objection

A diagnosis does not automatically lead to a benefit; applications are usually necessary, and the requirements are checked in each individual case (see the linked articles).

For yourself

Hearing the diagnosis can bring relief, grief, anger or all of them at once. The guideline explicitly mentioned addressing fears and feelings of guilt about causes and consequences in concrete terms. ^{[1, Rec. 37]} In acute emotional distress you can reach the TelefonSeelsorge free of charge on 0800 1110111. ^[4] For adults with a late diagnosis there are also self-help and advice services; for orientation see the Contact points.

What else you should know

• You decide whom you inform and when. For children, the legal guardians decide in the first instance. For therapy, the 2021 guideline provided that adolescents should, where possible, have a say in involving the legal guardians. ^{[2, Rec. 106]} Whom you tell about the diagnosis is your decision (editorial assessment).
• No autism diagnosis? Support may still be sensible; the guideline stated that if no diagnosis is made, the reasons should be explained. ^{[1, Ch. B.6.3.1]}
• Not covered: deadlines and requirements of individual benefits in detail; they are in the linked articles.

Sources and literature

1. DGKJP, DGPPN et al. Autismus-Spektrum-Störungen im Kindes-, Jugend- und Erwachsenenalter. Teil 1: Diagnostik. S3-Leitlinie, AWMF-Reg.-Nr. 028-018, Textstand 23.02.2016 (Kap. B.6, Empf. 36–38). – Guideline (in German) (expired; according to the document note under revision)
2. DGKJP, DGPPN et al. Autismus-Spektrum-Störungen im Kindes-, Jugend- und Erwachsenenalter. Teil 2: Therapie. S3-Leitlinie, AWMF-Reg.-Nr. 028-047, Stand Text 02.05.2021 (Empf. 1, 4, 6, 106). – Guideline (in German); expired on 23 March 2026 (see no. 3)
3. DGKJP. Aktuelle Leitlinien (Einträge 028-018 „Gültig bis 04.04.2021“ und 028-047 „Gültig bis 23.03.2026“). https://www.dgkjp.de/wissen/aktuelle-leitlinien/ – Professional society (website in German)
4. TelefonSeelsorge Deutschland: Startseite mit Rufnummern. https://www.telefonseelsorge.de/ – Counselling service (website in German)